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Constructive advice needed…

Posted by goose on 5/23/05 at 08:12 (175521)

Please help me. Some of you may remember me…I am 27, normal weight had bad PF for two years but found great relief with transverse friction massage. Last month I went back for few more treatments in order to get more active for summer but something went bad. My feet swelled up after treatment and I think a nerve got entrapped because I am serious pain. I have been in a wheelchair for one month, I have to take vicoden and I can NOT walk at all. I am so scared, so PLEASE do not scare me further.

My pod thinks it might be Baxter's nerve; I am going in today to discuss. It is burning pain right at the heel/arch area. The right foot is worse but both feet are bad. I know all about the risks of foot surgery but in this case, I'm not sure that I have other option to un-entrap this nerve. I am trying to get in at Mayo ASAP for another opinion (and at other pods) My MRI was negative and my EMG was fine. Also, blood work as been fine. Needless to say, I am having panic attacks because I am so scared of surgery yet I am disabled right now.

Re: Constructive advice needed…

Terri on 5/23/05 at 13:00 (175545)

I'm not a doctor but if it's in both feet that is puzzling. And both feet started to hurt around the same time ? Yes, I would talk another doctor before surgery for sure.

Re: Constructive advice needed…

Elyse B on 5/23/05 at 15:33 (175556)

that is not so puzzling, I have had it in both feet since day 1 a year ago. Goose, with all due respect to the podiatrists on this board, if you were to consider surgery, please see an ankle and foot specialist, who specialize in foot and ankle surgery. I think maybe it is time to see a nuerologist.

Re: Constructive advice needed…

John H on 5/24/05 at 10:17 (175621)

I tend to agree with Elyse with surgery that goes above the ankle. Look for a Doctor who has done what ever surgery you may consider many many times. Practice makes perfect as the saying goes. Look for a Foot and Ankle M.D. with a Fellowship in foot and ankle surgery. Podiatrist are very good and probably more experienced in some surgeries of the foot and may be the Doctors of choice. Podiatrist tend to do more PF releases than Orthopedic Surgeons and if one is considering that procedure may be a better choice. I have seen both many times. Goose do you have a diagnosis that 2-3 Doctors all agree with?

Re: nerve entrapment?

goose on 5/24/05 at 11:07 (175625)

Thanks guys.

One female pod (who is very warm and nice) thinks it might be Baxter's nerve entrapment. She shot the nerve with Novocain and it allowed me to walk for several hours without pain. A lot of my foot was numb at first but that wore off and pain spot was still okay all day. She said there is a surgery to remove part of that Baxter's nerve (first branch of the lateral plantar nerve treatment) which has very good results. She comforted me that I will not be in wheelchair forever...

One pod (who is cockier but does way more surgeries, top 3 in state he says) thinks it is TTS and recommends decompression surgery. He does not really believe in Baxter's nerve and said the surgery is the same anyway? He kind of thought I was overreacting (which I may be) and said he has done lots of these with good results (80% success). By the way, both feet are bad, right is worse. He told me I don't need to use the wheelchair but he is wrong, the feet would kill me if I walked. He gave me the name of his 'mentor' for a second opinion.

I have heard such bad things about surgery that I am literally sick to my stomach with fear. As I said, I am trying to see a Sport Med Specialist at Mayo ASAP, Dr. Jay Smith. I am young and so afraid my life is going to be full of pain. My family is urging me to trust the docs but I am having a very hard time. I am going to get on an anti-depressant today to help me cope and make the correct choice. Because I can not walk already, I am know it will be surgery but I just need to pick the right surgeon for the right cause. 4 weeks of waiting and not walking is very difficult, but I am afraid it will not be over anytime soon. Sorry to be so down right now...

Any positive stories would be welcome. Any other treatments anyone knows of? Thank you!

goose

Re: nerve entrapment?

Elyse B on 5/24/05 at 11:49 (175628)

hey goose, I hope that you get some responses to your posting about surgery. I have seen 'Baxter's nerve' on the boards. Maybe you can post to Elliott directly as I believe he is the 'resident TTS expert' or on the Foot Surgery boards?

I think an antidepressant is a GREAT idea. Chronic pain tends to consume us and we become obsessed with it and it takes over our lives. I also suggest anti-anxiety meds, i.e., Klonopin or something like that (as you know I am not a doctor) because it is great because you can take 'as needed.'

I feel the same way about trusting doctors and how difficult it is to make the right choice on what to do. Getting opinions is a great idea, hopefully the docs will have a consensus on what to do.

Keep us posted on what is happening and let us know about the doctor at the Mayo Clinic.

Re: nerve entrapment?

Dee on 5/24/05 at 12:26 (175630)

Regarding doctors, does the ortho specialize in nerves? There are some out there who do specialize in nerve surgery.

I found a high resolution MRI to be helpful in diagnosing - by high resolution I mean 3 Tesla. I had one MRI which showed nothing and shortly thereafter another MRI which showed much more.

A negative NCV study does not necessarily rule out nerve problems.

On a postive note, I have noticed some good TTS surgery outcomes on the board lately. The key seems to be in the proper diagnosis which you are going about in an educated logical manner.

Please let us know what you find.

Re: nerve entrapment?

Elyse B on 5/24/05 at 13:27 (175633)

one other thought, Randy Moss, from the Vikings had PF, maybe you could ask around who his doctor was or some of the other professional teams out there, i.e, Timberwolves etc.

Re: nerve entrapment?

Rachael T. on 5/24/05 at 17:35 (175643)

Hi Goose, I am writing as I too was really almost crippled at one time from my pf. I didn't use a chair - but prob. should have & maybe would've healed more readily....I mostly wore Birks back then. But, I write to tell you not to give up....& of course, I am no dr. - so you will have to place your trust in them. But, I did ALOT of things & found that time & rest & of course, orthotics (the right ones-& yes, that takes time, work & cash to find the right ones) & even still - I 'change' periodically from 1 pr. to another - But, I can now ride my horse, my bike, & shop at the mall - of course, I don't overdo, but I do have a life once again. It isn't my 'previous life where I rode 10-13 horses daily; but I can ride 2 every other day now w/o problems. So, hang in there & be patient & try to have a positive outlook.

Re: Constructive advice needed…

John from MN on 5/24/05 at 19:18 (175658)

Goose,

Sorry to hear about your condition. I take it Josh is unable to help you? I went to the Mayo and would trust them if you needed surgery. I have had no pain since treatment.

Our prayers are with you

Re: nerve entrapment?

Ron on 5/24/05 at 19:21 (175659)

> One female pod (who is very warm and nice) thinks it might be Baxter's
> nerve entrapment. She shot the nerve with Novocain and it allowed me to
> walk for several hours without pain.

This reminds me that this is what pain centers do to locate where the problem is coming from without question.

I looked up Baxter's Nerve Entrapment and this site looks like it has some good information on it.
http://www.myfootshop.com/detail.asp?Condition=Baxter's%20Nerve%20Entrapment
OR http://tinyurl.com/aw2by

I know that you are quite paranoid about getting operated on, and there's no one out there who couldn't agree with you more. The best thing to do is talk to your doctor, or find one you really trust and talk to him about your worries. This may be your only choice right now. Just don't listen to too many positive stories about people's successes, and don't listen to too many negative ones either. Many people have been operated on without complications.

Good luck!

Re: Constructive advice needed…

Elyse B on 5/25/05 at 05:23 (175677)

is it possible that John caused this since not only has Goose gotten worse but Place has as well.

Re: nerve entrapment?

Ralph on 5/25/05 at 07:28 (175679)

My thinking is if you go to a place like Mayo if the first doctor you see can't provide help he certainly has others to refer you to.

I think the same would be true with Mass. General. People look up to both this facilities.

Good luck I hope you find relief

Re: nerve entrapment?

goose on 5/25/05 at 08:04 (175683)

Update:

I saw my primary care doctor yesterday and he was sort of shocked at how bad this got. He gave me a med that is an anti-depressant and helps with nerve pain. The best part is that he called over to the the top foot & ankle M.D. at the U of MN and demanded I get an appt this week. He got me in for Friday (usually there is a 3 month wait to get in). So, we will see...Mayo is just waiting for my MRI films before I get an appt with them, hopefully next week?

Thank you for your ideas and support. I hope that someday I can look back on this crisis and laugh instead of cry! Keep me in your prayers!

goose

Re: nerve entrapment?

Ralph on 5/25/05 at 08:29 (175685)

Good for you. You've got a good primary care doctor, one that doesn't mind pulling a few strings.

Re: nerve entrapment?

John H on 5/25/05 at 09:42 (175692)

I have had TTS surgery and seen several Orthopedic Foot and Ankle Specialist. I had the battery of test for TTS. Bottom line is that even the gold standard test for TTS are not 100% proof positve you have a trapped nerve or do not have one. As three Doctors advised me the only real way to know is to do the surgery and look. My Doctor said the call was up to me. I was having a Cheilectomy on my great toe and as I was being rolled in for surgery I told the Doctor to go ahead with the TTS surgery. Results were he only found a small vericose vein in the tunnel which he removed and was not the cause of my PF type pain. There is a lot of unnecessary TTS surgery being performed but then again the surgery does 'rule out' a possible cause so does serve a purpose whether it cures you or not. I do not know the actual statistics of successful TTS surgery (meaning it cures your problem). From the small sample on this board and what I read I think it is small. I also had a 'Baxter Procedure' where a small section of fasica over the baxter nerve is removed. The thinking by Dr. Baxter being that there is pressure on the nerve from an inflamed fascia. This type of procedure is only about 20 minutes and rapid recovery. Performed primarly by Orthopedic Foot and Ankle Surgeons trained in the Baxter Procedure. Many Doctors are not aware of this procedure.

Re: Constructive advice needed…

Looking for Answers on 5/25/05 at 14:11 (175712)

John could you tell us more about the treatment you recieved at the Mayo clinic. The burning in my arches has progressed to tingling and what feels like plantar pain. Was wondering if you could give more advice on what was done for you to resolve your problem. Thanks.

Re: Constructive advice needed…

John from MN on 5/25/05 at 17:06 (175722)

I went to the Mayo Clinic and they said they could not do anything for me for PF. Other friends of mine who have had foot surgery raved at how great they were. My 5 years of PF was cured by Dr. Sandell who performed transverse friction massage. It was 2 months of treatment and I was back to normal.

Understand, I had all the treatments, taping, night-splints, casted feet, 2 ESWT surgurys, without success. I know the pain all too well. I had a handycapped plates for 4 years. I interviewed over 100 doctors in a span of 5 years and finnaly found one that made sense.

I know I can help you get better, what part of the country do you live in?

Re: Constructive advice needed…

Elyse B on 5/25/05 at 18:28 (175726)

John, Goose and Place are doing worse after seeing Dr. Sandell, I would think twice about recommending him wouldn't you think that would be prudent?

Re: Constructive advice needed…

John from MN on 5/25/05 at 19:06 (175729)

I don't know what happend to them. If you had Dr. Sandells treatment you would understand the mechanics behind it. He has cured over 5 people I know.

Re: Constructive advice needed…

Ed Davis, DPM on 5/25/05 at 22:40 (175737)

Goose:
Don't rush into surgery. First, check to make sure that you may be dealing with a Baxter's neuritis as oppose to tarsal tunnel syndrome -- this may be checked by NCV. Consider dianostic blocks with lidocaine and hyaluronidase as it will tell you of Baxter's nerve is involved by numing it and hyaluronidase will dissolve any scar tissue which is pressing up upon it,
Ed

Re: nerve entrapment?

Ed Davis, DPM on 5/25/05 at 22:52 (175738)

John:
I am not sure if it is a question of awareness but rather one of the procedure being not widely accepted in neither the orthopedic nor the podiatry community. Baxter, in performing the procedure releases some of the most problematic medial plantar dascial fibers so we don't know if part of the calimed success rate of the procedure is due to a true nerve decompression or because a partial plantar fascial release was done.
Ed

Re: Constructive advice needed…

Ed Davis, DPM on 5/25/05 at 22:58 (175739)

Elyse:
I assume that you are implying that goose may need see an orhtopod that specializes in the foot and ankle. My partner, Dr. Eric Leonheart did a 3 year residency in reconstructive foot surgery plus a one year fellowship on rebuilding crushed ankles in Germany. Find an orhtopod who has logged half the hours training in foot surgery as Dr. Leonheart and I would consider your statement.
Ed

Re: Constructive advice needed…

Elyse B on 5/26/05 at 04:59 (175747)

you know what happened to Goose, read the postings above.

Re: Constructive advice needed…

Dee on 5/26/05 at 08:43 (175751)

Hi Dr. Ed.

The hyaluronidase enzyme sounds very promising, especially since it doesn't appear to have the same downside as cortisone. Is there any research to support it? i.e. does it work better on certain types of scar tissue versus others? does the age of the scar tissue matter? does the mass matter? how does it differentiate between scar tissue and normal tissue?

Thank you.

Re: Constructive advice needed…

John H on 5/26/05 at 09:14 (175752)

Yes I would!

Re: Update II

goose on 5/26/05 at 11:29 (175763)

Hi guys,

Well, I'm not putting blame on anyone for this. The friction massage worked wonders and I have heard of more and more people with PF who have been cured from it. Dr. Sandell is awesome and has been my biggest advocate in this crisis.

Here is the latest...

Because of the sudden onset, precipitating factors( like walking tip tyoes) and general oddity of this pain, my pod is hoping it might just be a 'neuritis' or inflamed nerve. The Novacain helped a lot and yesterday I had cortisone shots into the nerve and I am walking very gingerly now. My PT came to the same conclusion on his own after consulting all week. There are even gentle exercises that can be done to help the nerve glide back into place once it is calmed down by the cortisone. I hate to get my hopes but maybe this will give me back my feet. Keep your fingers crossed, please.

So, I will keep you posted. Thanks again for the support!!

goose

Re: Update II

KW on 5/26/05 at 12:26 (175764)

Goose - you are in my thoughts and prayers. Keep us posted please.

Re: Update II

Elyse B on 5/26/05 at 12:46 (175765)

Goose, I hope that is what works for you and it is something so 'simple.' I will be thinking of you. FYI I was not blaming Dr. Sandell, I just think one has to be really, really careful with transverse friction massage. Please keep us posted.

Re: Constructive advice needed…

Ed Davis, DPM on 5/26/05 at 16:25 (175778)

Dee:
Our bodies make hyaluronidasesince we are building up and breaking down scar tissue. There is no question about the fact that hyaluronidase functions the way it was intended but cannot tell you what research is out there using in specific applications. Plastic and cosmetic surgeons use a lot of it to get rid of excess scar tissue after surgery.
Ed

Re: Constructive advice needed…

Dee on 5/26/05 at 18:04 (175787)

Dr. Ed:

Interesting. I wonder if it would work transdermally if a compounding pharmacist made it up for external scars.

Re: Update II

Rachael T. on 5/26/05 at 21:05 (175798)

Hang in there Goose & it sounds like you are doing a great job of just that. I really 'heard' in your last post that you are more positive & also more trusting of your professinals...that is a great start...Good luck & keep having positive vibes!

Re: Constructive advice needed…

Ed Davis, DPM on 5/27/05 at 20:33 (175829)

Dee:
Yes, we use it transdermally all the time as do cosmetic surgeons. Compounding pharmacists were necessary to make it up for a while when Wyeth Pharmaceuticals stopped making it by its more familiar name Wydase.
The term Wydase is like Kleenex to tissues. Most docs have know Wydase for years but may forget the chemical name, hyaluronidase. That is one reason why the term has not showed up more on the boards. As mentioned in a prior post a page or two back, it is back on the market made by a smaller pharmaceutical company.
Ed

Re: Update II

Cyndi on 5/28/05 at 11:32 (175842)

WOW, so sorry Goose,
Have you had a new nerve conduction test done? My second POD had me get one and I am now seeing a neurologist and he gave me Neurotin for the nerve pain.
It is helping but, I am still not back to before the pain. I also had the pain from day one in the arch and no AM pain.

Good luck, and I am glad to be back.
I found out I have thyroid (Graves DIsease) and wonder if it was caused by all this stress.
Cyndi :-)

Re: Constructive advice needed…

Jim from MN on 5/28/05 at 22:51 (175858)

What is transverse friction massage ? Where does Dr. Sandell practice ?

Re: Constructive advice needed…

John from MN on 5/31/05 at 10:51 (175925)

He is in Minneapolis MN. Give him a call 763.315.0466, maybe somone in your area does the same thing.